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ONE YEAR POST-ILEOSTOMY SURGERYl

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Posted 7/5/2011 7:53 AM (GMT 0)
Hello all,

I am a new member and I wanted to post some suggestions and encouragement to people who have recently had or will soon have ostoomy/ileostomy surgery. I wish someone, in the medical profession, had taken the time to let me know what to expect during my recovery period from this life-altering surgery.

SOME SUGGESTIONS AND INSIGHTS

1.) Initially, until the swelling of your small intestines has abated following surgery (an eight weeks or so, period), do not eat any solid food or you may suffer severe gas pains (which, to me, felt like a butcher knife sticking in my abdomen all night long) or, at worst, an intestinal blockage. Eat baby-jar consistency foods, in small quantities, several times a day as tolerated. Make sure you drink plenty of fluids. You will need at least 8 - 12 glasses of fluid a day.

2.) After my ileostomy surgery, I felt as if I’d been run over by a ten ton truck. Give yourself time to regain your strength. Get lots of rest and try to get up on your feet and walk a few steps, in the hospital, even if only for a short time. I have been told for every day one stays totally in the hospital bed, it takes one week additional to regain your strength.

3.) Make sure you’re given adequate prescription pain medication. Stomal discharge, on your skin, feels like acid. It dissolves skin and causes severe burning pain and bleeding. Unabated, the pain can drive you literally insane. I know. I ended up in a Psy. Ward exhausted from lack of sleep, unrelenting 10-plus pain and which ultimately led to volatile mood swings and suicidal ideation. My psychiatrist told me mood swings can happen when severe pain goes untreated.

4.) Remember that you won't always be so restricted in your food choices. There is life after an ileostomy. It takes time to recover. Be very gently and patient with yourself.

5.) No one ever told me that I'd eventually be able to eat all types of food again. After a few weeks, the variety of your foods choices will expand gradually. Remember to always chew your food extremely well or it will end up as a solid in your ostomy bag, or worse, you may risk an small intestinal blockage.

6.) If you have a figure-8 shaped stoma, like I do, it make take longer to find an ostomy appliance that will fit your individual stoma without burning and/or leaking.

7.) Since my stoma is flush, does not protrude above my skin surface, I've had to use deep convex wafers to keep my stoma from retracting below the surface of my abdomen.

8.) Use a waterproof soft, cotton-feeling pad (not plastic) on top of your sheets or under them, to protect your mattress from any leakage at night.

9.) DO try to get in touch with other ostomates (people who had ostomy surgery) and learn what’s worked best for them. The Internet is an excellent source of information and can enable connect you with other survivors of this life-altering surgery.

10.) Sometimes, the small intestines can be reconnected to the end of the colon. My ileostomy is irreversible due to prior pelvic floor damage from childbirth. Forever is a hard concept to accept, even now.

MY STORY

First of all. I'd like to say that my ileostomy surgery came as a complete shock to both my surgeon and me. I ended up with this life saving emergency surgery due to a strangulated, paralyzed colon.

After surgery, I felt like dying, the pain was so great and my future looked so bleak.

My story actually begins in India, where I lived for five months in 2007. While visiting India, for only a few weeks, I was suddenly unable to move my bowels. My previous colon habit was to have a bowel movement on a daily basis. After I was stricken, I was lucky if I was able to move my bowels once every ten days during the remainder of my stay in India.

Upon returning to the USA, in December 2007, I made several trips to the ER when I was unable to defecate after more than three weeks, in spite of consuming huge quantities of Metamucil.

My constipation had worsened, since my time in India, as I was now unable to defecate without soap enemas being administrated in the ER.

I was subsequently referred to see a gastroenterologist who was considered a national 'expert in colon motility'. Several times a year, in fact, this doctor was a paid guest lecturer traveling the country sharing his expertise regarding colon motility problems. So I felt fortunate, at the time, to be under his ‘expert’ care. I was hopeful that he would be able to help alleviate my persistent constipation.

After my initial visit with this gastroenterologist, he ordered a Sitz Marker Test, which revealed that I had partial paralysis in the last curve of my intestines leading to the anus.

I remained under the care of this physician, for more than 3 1/2 years, during which time he prescribed several different prescription medications. They were subsequently all of little to no use. I continued to suffer from severe constipation.

The one important test my gastroenterologist chose not to repeat (which in my opinion constitutes medical negligence) was to order another Sitz Marker Test to see if the paralysis in my colon was spreading esp. since my constipation was not improving

While visiting my primary care doctor, on June 30, 2011, I was suddenly stuck with a wave of the most excruciating abdominal pain I'd ever experienced in my life. I could not stop screaming at the top of my lungs whenever the waves of pain struck every 30 seconds or so.

An X-ray, at my local hospital, revealed that I had a strangulated colon. I was transferred, by ambulance, to a larger hospital where I received emergency abdominal surgery. The surgeon, who operated on me, thought she would be able to untwist my colon or, at worst, she told me, I might have to a partial colectomy.

During the surgery, my surgeon later told me, she was shocked to discover that my entire colon was atonic (without any peristalsis) and was grossly enlarged. Since my 5 1/2 foot colon was diseased, twisted and paralyzed, it had to be entirely surgically removed. Thus, an ileostomy was subsequently performed.

My first five weeks, post-operative, were a nightmare of trying to find an ostomy appliance, which wouldn't leak, causing the skin around my stoma to sting, burn and bleed. My internist was totally booked and then went on vacation, and I was unable to find another doctor to help me. After three weeks of unbearable pain, I began to experience wild mood swings from unrelenting, excruciating pain.

I became paranoid about eating the ‘wrong’ type of food since I had suffered several excruciatingly painful nights lying awake having eaten the 'wrong' food. No one told me what foods I could safely eat, so I stopped eating everything, except yogurt, and subsequently lost a lot of weight.

Since my surgeon had constructed a figure 8-shaped colon, the ostomy nurses (who I visited more than one dozen times) were unable to find an ostomy appliance which wouldn't leak and cause the battery acid-like discharge to burn and cause my skin to bleed.

After 9 months of agony, trial and error, I was finally able to locate an ostomy appliance that worked, without leaking. Today my ostomy appliance will usually lasting for 2 or 3 days before beginning to leak and needing to be changed.

My ostomy bags used to also blow up like balloons, waking me up at night causing the ostomy appliance to leak in the middle of the night. I was able to resolve this problem when I began to purchase ostomy bags with charcoal filters.

When I visited my ‘expert’ gastroenterologist, a few weeks after my surgery, he surmised that I had contracted a virus or a parasite, in India, which has injected toxin into my colon, that had gradually spread, over a 3 ½ year period, ultimately destroying the entire length of my large intestines.

During the time when I was under the care of my gastroenterologist, I had visited him several times. He had prescribed several different prescription medication, one after the other, which were ineffective.

When I asked my doctor if he had, in retrospect, sent me for another Sitz Marker Test to ascertain whether my colon paralysis was spreading, and if paralysis had indeed spread, he performed surgery to remove the diseased portion of my colon, would he have been able to save the remaining portion of my 5 ½ foot long colon, he said he didn't know.

So this is a summary of my experience this past year, my most difficult year ever, trying to adjust to living with a ileostomy.

I hope to be able to connect with some other people who have had this life-saving surgery.

If I can be of assistance to anyone who is facing this major, life-changing surgery or who has already had ileostomy/ostomy surgery, please don't hesitate to contact me.

To all new ostomates, please remember that you will begin to feel better as each day passes.

Take care and best wishes always,

4Grace2U
eyes
Posted 7/6/2011 6:44 AM (GMT 0)
Welcome and thank you for sharing your story and advice. You certainly have been on a rollercoaster. It sounds like you're doing really well now and getting to grips with your appliance. Look forward to chatting more with you.. as you know I'm going in on Monday for surgery - likely to have a perm ileo. I read others stories on here and feel mine is trivial in comparison, some are just awful and people have been through so much. But everyone is so kind and supportive and a great bunch and also very informed and knowledgeable. welcome X
Posted 7/6/2011 7:21 PM (GMT 0)
Dear Sarah,

Thanks for your reply to my story.

It is humbling to read the stories of other people on this forum. The strength of the survivors, here, is very inspiring and encouraging.

I can see that people are very compassionate and caring for one anther on this website.

Thanks again for responding to my story.

You will be in my thoughts and prayers on Monday the 11th.

Take care and best wishes always,

Judy
Posted 7/6/2011 8:29 PM (GMT 0)
Wow, that's a scary story -- so glad things worked out in the end, and that you're doing so well now, ready to help others. Welcome to the list and thanks for sharing. Congrats on being one year out of surgery!
Posted 7/7/2011 8:29 AM (GMT 0)
Thank you, blueglass! I can see you also have suffered for a long time.

I must admit that I never expected my body to take so long to heal from the surgery. I’m still trying to regain back my strength. Once I found an appliance (after 9 months of trial and much error) which affords me almost 2- 21/2 days of minimum pain, before beginning to leak, I began to believe that I could have a life, again, after my ileostomy surgery.

To complicate everything, I've put on 100 lbs of weight, in just one year, emotionally eating to numb my physical and psychic pain. Walking exhausts me now. But I’m determined not to give up. I have four grown children and six grandbabies and one on the way this month. So I can’t give up this fight.

When I was young, I never ever thought my body would begin to fail me at such a young age. I’ve suffered from clinical depression, for as long as I can remember, having lost my Daddy at age 16 and my mother’s love from the day I was born. She was an alcoholic and chain smoker and I was her scapegoat. I could never do anything to her satisfaction.

I’m a true believer that the psychic pain, fear for my safety and stress that I suffered from all my life, led to my immune system collapsing and a physical body breaking down which has led me vulnerable to major diseases. Do anyone agree with this concept?

Since age 30, I have suffered from interstitial cystitis, for 26 years now, which was caused by the sexual trauma my first abusive husband inflicted on me during our 14 years of marriage.

A motherly instinct to protect my children finally gave me to courage to leave the _______ . Nevertheless, I can't escape totally from this nightmare, even now. I am reminded daily, e, of the sexual abuse since there isn't a day that goes by without my bladder burning and irritating me. So I have to go to the bathroom more than 15 times a day to rid my hemorrhaging bladder of urine, which causes excruciating burning.

After my ileostomy surgery, I was frankly in shock. I must admit that I grieved, a while, having lost 5½ feet of a major body organ (my entire large intestines). It took me a few days to even dare ti look at my stoma for the first time, which I felt disgust looking at.. I was so angry and devastated having been put in this condition due to the negligence of my sarcastic and unapologetic gastroenterologist.

I suffered both emotionally and physiologically (if that makes sense) since my body and my mind were in a state of shock, esp. for the first month.

I can't tell you what a gift it is to be able to chat with you, and others, who understand my condition. Together we are all stronger, than suffering alone.

I am finding much comfort in having heard from you and Ironmom.

I hope that you, and your body, feel stronger each and every day. It will take time you a while longer to regain all your strength back. I know, because I'm still in a recovery mode after 1 year.

I just hope that one day the skin around my stoma will stop burning and bleeding from leaky discharge, which always manages to get beneath the wafer because of my unusual figure 8 shaped stoma.

At least now, after one year since my surgery, I can have one or two days when I can almost forget I have an ileostomy, apart from having to continually empty my ostomy bags.

Best wishes to you, blueglass, and thanks again for responding to my story.

Your Sister in recovery,

Judy


PS: My favorite colored glass is dark blue.

--------------------------------------
My Credentials- Life Experience in Summation

I'm a 56 years old woman (11/13/54), Mom to four grown children; 6 grandbabies with one more in the oven (girl named Angeli, due July 31st.)
Sufferer of Interstitial Cystitis since July 1985; an incurable, untreatable disease caused by sexual abusive by first husband.
Raised by an alcoholic, abusive, unloving mother.
My beloved father tragically killed in a single car accident in Dec.1970, when I had just turned 16. He was the only person, in my young life, who loved me unconditionally.
I’ve suffered from untreated ADHD all my life, diagnosed at age 5. A lack of social skills (inherent with ADHD) has caused me great interpersonal difficulties all my life.
I had heart failure, age 52, caused by heart valve damage due to ingestion of the weight loss drug Fen Phen. As a result of the heart value damage, I’ve been unable to take ADHD meds. An untreated ADHD life is like living in a chronic state of chaos, confusion and memory loss. I describe my brain as a "swiss cheese brain" full of holes where memories escape me. I forget and miss so much in life. Having untreated ADHD is like being on a merry-go-round that is spinning so fast you're unable to focus on anything.
I’ve had clinical depression since childhood. I’ve been treated by every known prescription medication made, plus 12 sessions of electroshock. All treatments and medication have been without any significant improvement in my depression symptoms.
Married for 14 years to an abusive first husband. Four children ages 27–34. I think they are my greatest achievement as I was a single parent for 11 years!
I've been happily remarried for 10 years to my second husband.
I had a botched left knee replacement surgery in June 2009. I'm suffering more pain now, than before my surgery. Right knee is also in great pain and distress due to osteoarthritis; bone on bone.
I had my surprise ileostomy surgery on July 1, 2010 due to a twisted colon and a atonic, grossly enlarged large intestines caused by a parasite or virus contacted while in India (2007) and misdiagnosed by an incompetent gastroenterologist.
Still trying to recover from the most difficult surgery in my life (my ileostomy surgery).
I'm truly thankful to be able to connect with other women (men?) who understand. smilewinkgrin cool cool cool
Posted 7/7/2011 12:47 PM (GMT 0)
Have you ever gone to a stress reduction program or tried meditation? I was just reading that meditation is being used in treatment for adhd, and it's not a drug, so won't interfere w/any other conditions (can help them too). I went to a program, didn't help my physical symptoms at all, but helped me cope a lot better.

I had a rough childhood too, and I used to think it was responsible for my disease. Maybe it was, but I think it was also my explanation for everything bad that happened in my adult life. In my case, my illness has oddly helped me to let go of lots of old pain. I keep a blog, and much of my family reads it, and I can tell that for whatever their emotional shortcomings, they care about my suffering and want it to end. And that matters a lot to me.

At the stress reduction program I did learn that if you spent a significant time in "stress response" before age twenty, then your brain really does develop differently, you become hypervigilant, with parts of the brain that send out stress hormones bigger than they should be and parts that inhibit them smaller. I found it really helpful to know this, and to know that meditation directs blood flow differently and can actually undo the damage.

I hope that the good things in your life keep multiplying.

I have a little piece of blue glass that I carry with me..... has great personal symbolism, as I had a similar one as teen and gave it away because I thought I had to..... when I found another one, it became a reminder to always keep something for myself too.
Posted 7/7/2011 3:00 PM (GMT 0)
Thanks for putting the time into telling your story - it is very unusal how you came to have colonic inertia and i do agree with your theory about how life events can cause physical ones i do believe that.

I had an ileo and could be going back to one as my reversal hasnot worked - it cld be the pelvic floor or smal bowel. I wonder if pelvic floor disorders are caued by childbirth... i remember in the the early years after having my first that i had to up my fibre intake substantially but never thought anything of it until recently.

 

Posted 7/8/2011 1:14 AM (GMT 0)
Dear bluegrass and Karen!

Thank you both for sharing some of your experiences with me.

Since I received both of your emails, at the same time when I logged onto the HealingWell website this afternoon, this website’s software makes it impossible to answer both of you in individual emails, so I’m writing separate emails within this email for you both instead.

Dear blueglass.

When I used to meditate in college, using Transcendental Meditation, I definitely noticed a reduction in stress. It was hard for me keep meditating for 20 minutes, twice a day, so I stopped after only a year or so, much to my detriment.

I also understand that in order to get well, we who were abused in childhood, need to stop thinking of ourselves as victims, but instead as Overcomers because we DO have choices that we can make today that can positively influence our lives. Meditation, for one, is a very useful tool/choice we can use/make.

Thanks also for your insight concerning the consequences of early childhood stressors and the benefits of meditation to counteract negative beliefs/influences. In your letter you mention:

"if you spent a significant time in "stress response" before age twenty, then your brain really does develop differently, you become hyper vigilant, with parts of the brain that send out stress hormones bigger than they should be and parts that inhibit them smaller. I found it really helpful to know this, and to know that meditation directs blood flow differently and can actually undo the damage."

Blueglass, I have also heard that chronic pain causes a severe stress load on the mind/body. As you’ve mentioned, chronic pain causes us to become hypersensitive to future pain episodes.

So we, as Survivors, are in a Catch-22 situation. But I believe we are NOT without any options to escape this vicious cycle.

I'm glad to know that meditation is one good way to reduce some of these negative physiological effects we face each day which compromise our health and our well being.

I found an interesting article about how stress can increase the level of chronic pain. If you're interested in reading the article, the web address is:

http://www.everydayhealth.com/pain-management/stress-and-pain.aspx . The name of the article is "Eliminating Stress Brings Pain Relief".

The number one challenge I face theses days is motivation.

How is your level of pain these days?

Thanks for your encouragement!

Best wishes always,

Judy
----------------
Dear Karen (2much2bear),

Thank you for responding to my email.

Some days I feel like my illnesses are 2much2bear.

I can only imagine the daily struggles you face with your rectal/motility issues since your reverse Ileostomy surgery on Sept. 23, 2010.

FYI, I found an article on Wikipedia which addresses the connection between pelvic floor dysfunction and pregnancy.

The web page is: http://en.wikipedia.org/wiki/Pelvic_floor_dysfunction . In the Wikipedia article, it mentions defecatory dysfunction (which includes constipation) as one of the pelvic floor dysfunctions.

I definitely suffered, after my pregnancies, from long-term constipation and I twice had pelvic floor surgery which didn't fix my stress incontinence or my rectocele.

Constipation is no longer an issue with me (obviously with my Ileostomy), but keeping my electrolytes in balance has been a challenge for me.

At one time or another, I have suffered from too much blood potassium and/or too little blood sodium. Electrolyte levels in one’s blood are critical because too high or too low levels can cause heart arrhythmias which can, ultimately, lead to sudden death.

My doctor daughter, Sangita, told me not to be concerned about what I eat. Drinking too much juice, however, adds a lot of calories and can affect the level of electrolytes in the blood.

It's better just eat raw fruit, if you can afford it. I'm at my daughter's house now, so she's buying lots of fresh fruits.

Did you know that "No-Salt" (or any other salt substitute made from potassium chloride) can raise one’s blood potassium levels precipitously? Also, various kids of vitamins and processed foods (read food labels!), can have high hidden amounts of potassium. I have often found the potassium listed in the small fine print on the labels instead of the large print.

I’m curious, Karen, have you had difficulty with balancing your electrolytes? You may not have had any difficulty. I believe my health is complicated by the fact that I also have heart issues.

Good luck if you decide to undergo a reversal of your Ileostomy. We, on this website, will be pulling* for you!

I know it has taken me more time to learn how to live with my permanent ileostomy, because I wasn’t able to find an appliance that didn’t leak, burn and cause my skin to constantly bleed for nine long months.

Someone suggested that I get busy doing things I enjoy, like volunteer work and/or cross-stitching etc.. This will help keep my mind off my chronic pain and health issues and help me feel more useful and productive and, thus, more satisfied with my ’new’ life, post-surgery.

I've been on Social Security Disability for several years. I'm hoping to get some job training and, in the near future, an employer who will accommodate my health needs such as, on some days, having to go to the bathroom every few minutes due the my bladder pain caused by the disease Interstitial Cystitis.

Remembering to take just one day at a time is the best way for me to deal with my life these days.

My four children are all grown and gone. I miss them because they gave me a sense that I was doing a very important 'job' raising them as a single mom. I lost my internal compass, along the way due to my illnesses and chronic pain. I long to find my purpose once again.

I'm so thankful for this website.

Please keep in touch!

Best wishes always,

Judy (from NH, temporarily near San Francisco for another 1½ months.

*Push n' Pull (definition)
)
(http://askville.amazon.com/expression-PULLING/AnswerViewer.do?requestId=7744638

When we say we are pulling for you, we have a long rope that leads to heaven, and the heavenly Father answers our prayers. Yes, we should be pulling for each other, every day. It would be unwise to tell someone not to pull lest the rope goes around your neck. .

--------------------------------------
My Credentials- Life Experience in Summation

I'm a 56 years old woman (11/13/54), Mom to four grown children (27-34); 6 grandbabies with one more in the oven (girl named Angeli, due July 31st.)

Sufferer of Interstitial Cystitis since July 1985; an incurable, (in my case) untreatable bladder disease caused by sexual abusive by first husband.

Raised by an alcoholic, abusive, unloving mother.

My beloved father tragically killed in a single car accident in Dec.1970, when I had just turned 16. He was the only person, in my life, who loved me unconditionally.

I’ve suffered from untreated ADHD all my life, diagnosed at age 5. A lack of social skills (inherent with ADHD) has caused me great interpersonal difficulties all my life.

I had heart failure, age 52, caused by heart valve damage due to ingestion of the weight loss drug Fen Phen. As a result of the heart value damage, I’ve been unable to take stimulant ADHD meds. An untreated ADHD life is like living in a chronic state of chaos, confusion and memory loss. I describe my brain as a "Swiss cheese brain" full of holes where memories escape into a void. I forget and miss so much in life. Having untreated ADHD is like being on a merry-go-round that is spinning so fast you're unable to focus on anything.

I’ve had Clinical Depression since childhood. I’ve been treated by every known prescription medication available, plus 12 sessions of electroshock. All treatments and medication were without any significant improvement in my depression. Recent counseling has helped me to become assertive in most situations when needed. Previously, I was a very passive person and let people walk all over me. Realizing that I DO have choices, today, has also helped me to feel a lot better mentally.

I was married for 14 years to an abusive first husband. Four children ages 27–34. I think they are my greatest achievement as I was a single parent for 11 years!

I've been happily remarried for 10 years to my second husband. We’ve had our struggles, but we have a greater understanding of one another now.

I had a botched left knee replacement surgery in June 2009. I'm suffering more pain now, than before my surgery. Right knee is also in great pain and distress due to osteoarthritis and my current obesity; bone on bone.

I had my surprise, emergency Ileostomy surgery on July 1, 2010 due to a twisted colon and an atonic, grossly enlarged large intestines caused by a parasite or virus contacted while in India (2007) and then misdiagnosed by an incompetent gastroenterologist. I’m still trying to recover from the most difficult surgery in my life (my Ileostomy surgery). I’m slowly making progress.

Being able to connect with other women (men?) on this website who understand, has been wonderful, a Godsend!. There’s nothing like Being validated! turn eyes smilewinkgrin
Posted 7/8/2011 9:51 AM (GMT 0)
Hey thanks Judy

i wish you well in continuing to improve your health i really do. Thank you for that website info i will look at that. xx
Posted 7/8/2011 12:18 PM (GMT 0)
Judy,

I don't have much pain these days, fortunately. Pain was not a big part of my disease, and after the surgery, it wasn't that bad, considering. I have an unhealed butt wound, which is uncomfortable sometimes, but not painful. I have dealt w/chronic pain when I had back problems years ago, and it is very stressful. Thanks for asking.

I hope you keep feeling better. Take good care.
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